Ethics of Future Disclosure of Individual Risk Information in a Genetic Cohort Study : A Survey of Donor Preferences

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概要

• 論文の詳細を見る

• Background: Although genetic epidemiologic research has added an element of individualization to epidemiologic research, there is neither agreement nor much discussion on whether donors of genetic samples should be offered an opportunity to receive individualized results regarding their genetic susceptibility to disease. Little is known regarding donors preferences for future disclosure of individual results. The purpose of this study is to investigate the actual preferences of such donors with regard to receiving individual results, to explore the factors related to their decision, and then to discuss ethical issues regarding the disclosure of results.Methods: Participants (n = 1857) of an ongoing Japanese population-based genetic cohort study in Takashima, Shiga, in 2003, were asked at entry about their preferences with regard being recontacted by researchers in the future and whether they wanted to receive reports on their individual genetic results if genetic problems relevant to their health are discovered for which efficacious interventions might be available.Results: Most of the donors wished to be recontacted and receive reports, but some did not want any reports. Those who were younger, former/current drinkers, or had at least 1 parent who had had cancer were more likely to want the results, while those who had at least 1 sibling with a medical history of cancer were less likely to want the results.Conclusion: We observed a high level of positive preference for future disclosure of individual genetic results, which is in line with the professional views on the ethics of this issue. A well-considered procedure for ascertaining donors preferences for receiving the results of the research is required from an ethical perspective.

• 日本疫学会の論文
• 2008-09-01

著者

• Ueshima Hirotsugu

  Department of Health Science, Shiga University of Medical Science

• 喜多 義邦

  Division Of Preventive Cardiology National Cardiovascular Center

• Kotani Yasushi

  国立循環器病センター 予防検診

• Kawano Yuhei

  国立循環器病センター 高血圧腎臓内科

• Ueshima Hirotsugu

  滋賀大学 医学部健康科学科

• Kaneda Yasufumi

  Division Of Gene Therapy Science Osaka University

• KITA Yoshikuni

  Department of Health Science, Shiga University of Medical Science

• Matsuo K

  Division Of Epidemiology And Prevention Aichi Cancer Center Research Institute

• Matsuo Keitaro

  愛知県がんセンター研究所 疫学･予防部

• Kobayashi Yoshio

  Cardiovascular Division National Cardiovascular Center

• UESHIMA Hirotsugu

  Committee for Epidemiology and Clinical Management of Atherosclerosis

• Katanosaka Yuki

  国立循環器病センター

• 喜多 義邦

  島根大学 医学部環境保健医学講座公衆衛生学

• Kosakai Yoshio

  Department Of Cardiovascldar Surgery National Cardiovascudar Center

• MATSUI Kenji

  Department of Biological Chemistry, Faculty of Agriculture and Applied Molecular Bioscience, Graduat

• Matsui Kenji

  Department Of Biological Chemistry Faculty Of Agriculture Yamaguchi University

• Kita Yoshikuni

  Department Of Health Science Shiga University Of Medical Science

• Kokubo Yoshihiro

  Cardiovascular Division National Cardiovascular Center

• KITAGAWA MOTOJI

  Department of Internal Medicine II Nagoya University School of Medicine

• Ueshima Hirotsugu

  Department Of Health Sceicne Shiga University Of Medical Science

• LIE Reidar

  Center for International Health, the University of Bergen

• Kakeji Yosihiro

  九州大学 医学研究院消化器･総合外科

• Yoshita Katsushi

  Project For The National Health And Nutrition Survey National Institute Of Health And Nutrition

• Ueshima Hirotsugu

  京都女子大学 循環器疫学

• Ueshima Hirotsugu

  The Research Committee For Primary Hyperlipidemia Research On Measures For Intractable Diseases By T

• Kadoshima Yoko

  Department Of Public Health Kanazawa Medical University

• Kaneko Yoshihiro

  The Second Department Of Internal Medicine Yokohama City University School Of Medicine

• Lie Reidar

  Center For International Health The University Of Bergen

• Kosakai Yoshio

  National Cardiovascular Center

• Mizuno Kyoichi

  The First Department Of Internal Medicine Nippon Medical School

• Matsui Kenji

  Department Of Biological Chemistry Faculty Of Agriculture And Department Of Applied Molecular Medici

• Matsui Kenji

  Center For Biomedical Ethics & Law University Of Tokyo

• Matsui Kenji

  Department Of Biological Chemistry Faculty Of Agriculture And Applied Molecular Bioscience Graduate

• Mizuno Kyoichi

  Division Of Cardiology Hepatology Geriatrics And Integrated Medicine Department Of Internal Medicine

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